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^{A snapshot of Fabry disease…}

“I am 31, and Fabry disease affects me daily with burning pain in the hands. I had a kidney transplant three years ago when I was 28, and since then I have to take medication daily, and monitor blood pressure and so on. Before my surgery, going through dialysis had a big impact on my life. My inability to sweat affects me occasionally. It goes hand in hand with my body temperature. As my body temperature rises, pain increases in the hands.”

^{Early experiences…}

“When I was a child, the most prevalent everyday symptom was burning of the feet. It started when I was about 8 years old with physical exercise and changes in body temperature. And then when I was about 13, it switched to the hands, and it’s been in the hands ever since. Other members of my family have had it, and they always called it burning hands and feet.”

^{The diagnosis…}

“I was diagnosed at 28, after a physician visit for unrelated reasons. A urine test showed that I’d lost a lot of protein, and I was referred to a nephrologist. Kidney X-rays showed that the inner layer of my kidneys was deteriorating. A kidney biopsy brought back the diagnosis of Fabry disease.”

^{Coping with Fabry disease…}

“My burning hands limit my recreational activity. My friends like to go out and bike, play games or whatever. I hang in there about 30 minutes before my hands start hurting so badly I can’t continue. My doctor had to prescribe special pain medication because ordinary pain relievers had no effect whatsoever.”

^{Reaching out…}

“I talk with co-workers about Fabry just because they were concerned about my kidney transplant – what led up to it. I’d say the biggest conversation I had was when I discovered Fabry disease resources on the Internet. That was very informative, and interesting to know how many other people out there have this disease. To me, it seemed like nobody else had it.”

^{Advice for others…}

“Just stay in there. If I can make it through it, anybody can. It’s painful at times, and other people have different symptoms than I do, but you can live with it. It’s livable.”

NOTE: Although this profile was based on an interview of an actual person with Fabry disease, it has been edited for web presentation.

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